Our NICU story

I've been encouraged to write my story for a while by my bf cheerleaders, so, finally..! These stories are important. I remember in my dark days I was desperately posting all over the internet just to find a positive story to prove that what I was struggling to do was possible! And, turns out it was :) So I hope my offerings might shine a light to someone lost like I was.

10 months ago my beautiful little girl after much wriggling about, decided to come join us a bit earlier than expected at 34 weeks. Breastfeeding for me was always a no brainer, it was an essential part of being a Mother and I already anticipated it may not be plain sailing, after seeing my friends go through their own battles. After narrowly avoiding a c-section (heart decels) my little one joined us, unexpectedly small for gestation at 4lbs1 but well.

The first night, I was given a syringe and given a whistle stop tour of hand expressing, with a photo of her (I was adamant the mis shapen picture of her had NO resemblance to her true form, she was perfect, not this red wrinkly ball!). We were allowed kangaroo care for a few minutes before she had to go back in the incubator. I'll never forget that evening and the incredible love swelling through me.

I had to go to the ward and she stayed in NICU, with instructions to express in the night. I remember crying and trying to positively frame the cries of babies around me..I didn't have my baby but at least I got to hear someone elses. I couldn't sleep and crept over during the night and hand expressed next to her incubator. I couldnt believe the tiny amount I was getting in the 1 ml syringe and how long it took, but still, the liquid gold was dabbed on her mouth and she was given Nutriprem via NG.

The next day it became clear things weren't going well. Vomiting, green aspirates and no bowel movements; everything came crashing down after a scan and an ambulance transfer to a surgical hospital within the hour, with a suspected bowel obstruction. I howled the place down, my belly ached and I was adamant it was my womb longing to have her back inside of me where she was safe.

Surgery happened the next day and lasted 4 hours, of which I fervently sat with syringe in hand, expressing in the parents accommodation like a mad woman to keep me occupied. It was working though and by day 3 I was using 5ml syringes and finally mastered how to get the air bubbles out (nothing compares to the pain of accidentally shooting out that precious 0.5 ml which took 30 mins!) Thank God it was the least serious situation predicted by the surgeons so no stoma was required and they predicted a full recovery. I still went every night to express by her incubator at 3am, as an excuse to see her in the night.

Day 4 I was shown the hospital's Medela pump and the nurse was brilliant. I thought nothing was coming out but at the end of my first session there was 10 mls from the left! The nurse was so positive and said it was a good sign my milk was coming. I began to get the famed Jordan effect and was overjoyed! Luckily because of her surgery, my lo was only having 1 ml an hour, which was being increased every 4-6 hours. It made it possible for me to keep up with her demand and for her to be exclusively given bm. I was shown my freezer shelf and marvelled at everyone elses massive stockpiles of milk.

Day 5 was very difficult, I was told as she was now stable and out of intensive care, I'd have to move out of parents accomodation and go home..only a 20 min drive away but it was heartbreaking. I wanted to continue doing her cares like a mother should, and expressing next to her at night. I hired a Medela pump from the hospital but it wasn't as good as the hospital one. My nipples had become raw and red and pumping was agony, I developed a patch of raw skin on my areola and the first few minutes of pumping I'd be curled up, eyes shut tight in pain waiting for it to calm down. My husband supported me throughout and a friend bought me Medela Hydrogel pads which gave me some relief. Part of the problem was I was always at the hospital so when I was home I spent time letting air get to them and used breast shells to stop my bra sticking to the sore.

After 3 weeks in hospital and a few ups and downs (cephelhaemotama, severe jaundice, TAT tube accidentally falling out and Hickman line getting stuck nearly needing more surgery), my little fighter was out of her incubator, clothed in baggy sleepsuits and ready to be transferred back to the original hospital- all we needed to do was crack breastfeeding and we'd be home!

Well it didnt take a couple of days like I'd hoped..! The neonatal unit at my birth hospital was much smaller and the staffs attitude to breastfeeding was very much 'just put her to the breast'. The plan was to keep the NG tube in and offer her the breast before her 4-hourly feed was due, then give a cup or NG top up. The problem was she was tiny, jaundiced and sleepy! The first few days I was just delighted that she was rooting for the breast and licking at it, but latching her on was very difficult. For one thing, her mouth just seemed too small! When she managed to latch on, she would do 'shallow sucks' as the SLT said, or have a few gulps and fall asleep. One morning the team decided to remove her NG and put her on demand feeding to encourage feeding. Well, after 6 hours without a feed she was fast asleep, I changed her nappy, picked her up, put her down, changed her clothes off and dabbed her with water..still asleep! Needless to say NG went back in.

I then began to find it impossible to get her to feed. I would only feed from the left because the right was excruciatingly painful for her to latch on and none of the nurses seemed to help- they would just repeat the 'nipple to nose' mantra and assume everything was okay but it wasn't.

She would slip off, or get into a cycle of latching on, coming off and screaming, latching on, coming off and screaming..it seemed to be getting more difficult. My midwife friend came in and spent the afternoon with me getting her to latch on (or rather shoving my boob in her mouth) and told me I had to feed on the right too and grit through the pain. This, on top of still pumping every 3-4 hours was a real test of patience. I asked the SLT to check for tongue tie as feeding was such agony but she said her tongue seemed to be able to move. She also tested if my lo would find a bottle easier, but still she barely drank any. We were told to just persevere, she was just small and tiring quickly.

The nurses, although were doing a great job with the babies, just didn't seem to have a clue about how to help me. They would pop their head in and if she was remotely near the breast would say well done, and leave us to it- even when she was screaming for 2 hrs while I was trying to latch her on. I felt that due to the 4 hourly feeding schedule, even when I spent the whole day at hospital she was only getting 3 chances to breastfeed so I asked if I could room in with the intention of giving her more practise (we had at this point been in the hospital for 10 days purely working on feeding). The plan was, I offer a bf every 4 hours. If after 20 mins she was unsucessful, a nurse would cup feed her (in this hospital the policy was parents couldn't cup feed). We wouldn'tuse the NG so she gets used to oral feeding, and if successful for 24 hrs without NG, it could be removed (a massive step closer to going home).

Well, that went to pot the first night, the nurse came in and gave an NG top up after I had trouble latching her on, and said that she was getting too tired. The second night, without my husband this time as he had to return to London for work, I phoned the nurses down the corridor to come and help as she wouldnt latch on and was screaming and arching her back. An hour and a half later, the nurse came in and apologised for the delay. By this time my lo had managed a tiny feed and gone back to sleep. At her next night feed, again she wouldnt latch on. I phoned the nurses and they said my nurse was on a break and she'd see me when she was back. Again, by the time she came an hour later my daughter had gone to sleep.

In the morning I was physically and emotionally exhausted and defeated. I wheeled her incubator down the corridor and introduced myself to the day nurse I hadn't met before. It was clear she'd been told at hand over about our night trouble and I'll never forget how awful she made me feel. I asked if she could help me latch her on as we had a difficult night and she replied with a sour face 'We're not midwives you know.. I don't know about breastfeeding' (I know for a fact all nurses were given bf training and oral feeding was the only reason we were still on the unit!) The nurse then said, (assuming I had roomed in to take her home), that I needed to face facts- that my little girl was 'obviously not ready to go home' and that 'trying to breastfeed was pushing her too far..but it's your decision'. I broke down in front of her and said I would be back in a minute.

After regaining some compsure, I went to the desk to ask if someone else could perhaps help me, and she said she had 'made the decision to NG feed her, it's best not to wake her for a cup feed'. So, that was the plan completely ignored then.

I was extremely upset by this point and began to doubt myself. Maybe if I had just given her a bottle I'd have a baby to take home with me. Maybe all that effort was for nothing. Maybe I was being selfish trying to breastfeed. Maybe she was just too small or sick to handle it.

My midwife friend was fuming at the nurses behaviour and phoned the infant feeding coordinator at the hospital (who in the 12 days I was there, I never knew existed!) She walked in withing minutes and you could feel the tension in the atmosphere as it was her who had delivered the bf training to all staff! She came in just as I had started to bf her and my little girl was being a star; for the first time ever, she perfectly latched on straight away and was audibly gulping away without any help- the coordinator went and got the nurse and praised us, asking what exactly was the problem..mum and baby know exactly what to do! The nurse, who I had clearly got into trouble, then apologised for her behaviour and asked if we could 'start fresh'.

With a renewed action plan, suddenly everything happened very quickly. The next morning, the NG was removed and the Dr asked me to room in for 2 nights- if they went well, we could go home.

And home we went!

Unfortunately things were still not smooth sailing, as feeding was still agony, nipples were bright red and swollen and she was often coming off and screaming. After a couple of nights at home we had a terrifying incident where she went bright red and stopped breathing, holding her breath and shaking her head side to side with saliva forming at her mouth, and then screaming and crying afterwards inconsolably. The neonatal midwife visiting us at home diagnosed severe silent reflux and told me to go straight to the GP. Finally, a reason for her fighting feeds. I asked to check for tongue tie and she said her tongue appeared fine.

The next battle was with the health visitors. Weight gain for us had always been slow, but surgeons and Drs were not concerned due to the surgery, as they said recovery would take its toll on her; any gain was considered good. The health visitors however were obsessed with the dreaded weight chart. My lo was born on the 25th centile, but at the time of being discharged was off the chart, and looking at her, she was tiny and all skin and bones.After researching on the internet I'd decided to go dairy free to see if it would help her reflux and slow weight gain.She was gaining 140g a week, which they werent overly happy with but then one week she only gained 100g. I knew what was coming when the nursery nurse said she would be back later in the week with the health visitor..hello formula top ups.

I was very upset at the suggestion, as I had spent 5 weeks religiously pumping every 3 hours, and had a freezer full of extra milk so I knew my supply was more than adequate and my daughter was constantly feeding. The health visitor uttered a brilliant line that my lo was now getting bigger and needed something more nutritious to meet her needs....my little girl weighed just under 6 lbs at this point!!! I tried the bottle with her twice. Both times she was horrendously sick after feeding. I tried to give breastmilk top ups after that, but she took 20 mins to drink less than half an oz. The health visitor had no choice but to accept it when I told her we wouldn't be having more formula thank you very much, it definitely did not suit her. I asked if she could check for tongue tie as three months on, feeding was still constant, painful and my nipples were constantly bright red and mis-shaped. One look in her mouth and she confirmed a tongue tie. She admitted this may have contributed to her slow weight gain and said she would phone me later to arrange a referral. Luckily, I decided to go private and phoned Ann Dobson, who came within 2 hours of my desperate phone call to her and did the snip- I say luckily because the health visitor never phoned me back! She also helped us have some cranial osteopathy which I was very grateful for.

Somehow we managed to slip under the health visitors radar and they no longer came for weekly weigh ins at home. We were being seen by the Paediatrician and Gastroenterologist, and her reflux was under mainly under control with Ranitidine and Domperidone.

Slowly, feeding became better, it was no longer hourly feeds which lasted 40 mins, the pain lessened and the constant feeding began to fade into the distance.

At 6 months we began hypoallergenic weaning under a Dieitician as she had a suspected dairy intolerance (she would have reflux or be very gassy and uncomfortable when I had dairy), and she had a confirmed egg allergy.

She's now nearly 10 months old and has managed to jump into the 9th percentile, she's healthy, beautiful, happy, smiling, babbling away and considering her reflux is doing very well with feeding. She's been such a fighter. She may be small and a bit behind physically, but she's getting there, and I'm so proud of our journey together :)

As a Muslim woman, breastfeeding was also something spiritual. Providing sustenance for my child was the purpose of my body producing milk (Quran Chapter 2, verse 233 if you're interested),so in my mind, giving up was not an option. You may be familiar with the term 'jihad' which the media likes to use to depict terrorism. Well, jihad actually means 'struggle' in Arabic, and as part of my faith, I accept that this life was not meant to be easy- there are struggles along the way which shape you and make you a better person. Now as I nurse my amazing girl to sleep at 10 months old, the struggles are a distant memory and I'm so relieved we made it here.

Special mention to my breastfeeding support group who always kept me going xxx

Comments (22)

You really need to put a disclaimer at the start of this warning people there will be tears. You're such an inspiration, and your little girl is blessed to have you as a mummy. There's so much more I could try and say but I can't find the right words. What an amazing lady you are x

ahh honey you've done so well, what a fighter your little princess is. It just go to show with the right determination you can do anything. It puts so many medical staff to shame for their condesending advice.

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